Summary

2017 Northern California Publishers and Authors Second Place in Book Cover

2017 Northern California Publishers and Authors Second Place in Memoir

2017 Readers' Favorite Book Award Bronze Winner

2017 International Book Awards: Autobiography/Memoir Finalist

2016 National Indie Excellence Awards: Memoir Finalist

Everyone has or had a mother. Dr. Virginia A. Simpson did too. She thought they had a wonderful relationship and had worked out all of their issues when a life-threatening illness necessitated her mother, Ruth, come live with her. When her mother moved in, she brought with her all their old issues and during the six years they lived together, they added more. Although an expert in the field of death, dying, and bereavement, Virginia often found herself overwhelmed by her caregiving role as her mother’s health continued to decline. She also felt herself on a race against time to heal their relationship before her mother died. Described as “stunning, beautiful, and honest,” The Space Between: A Memoir of Mother-Daughter Love at the End of Life offers an intimate window into the challenges of being a caregiving while also providing important information about the realities of end of life care. The Space Between gives us hope that even the most contentious relationship can be healed. By the end of Ruth’s life, the only space between Virginia and her mother was filled with love.

Book Preview

The Space Between - Virginia A. Simpson

PART 1:

PRACTICE ROUND

A practice round is played to allow a player to become familiar with a particular course, to differentiate it from the real round. But can one ever prepare for what lies ahead?

Chapter 1:

Practice Round Day One

It seems to me the best way we can manage the complexities about mother is not to remain in judgment of our mothers, no matter how hard that is. If we can find a way to stand in her shoes, and to learn who she was before she was a mother, we may find ourselves seeing her as a whole person, someone who had her own life, her own struggles and problems to solve.

—Linda Joy Myers, May 11, 2014

SUNDAY, JULY 4, 1999

My mother drives me crazy. She can send me from love to exasperation faster than my Uncle Henry’s Jaguar racecar could go from zero to sixty. I’m almost fifty years old, and you’d think by now she couldn’t exert this level of power over me.

Mom, you can’t just think about it. You have to call your doctor. A possible blood clot in your leg is nothing to mess around with.

Silence.

Part of me wants to hang up the phone, pack my little-girl red-and-black-plaid plastic suitcase, and run away to oblivion.

I don’t run. I stay because she’s my mother and she needs me.

It’s late afternoon, and inside, thanks to the air conditioner, my home is a cool, comfortable 68 degrees. Outside it’s 110, a typical desert summer day in Indian Wells, California. I’m stretched out on my sage-green chenille couch in the miniscule family room across from the kitchen. The ceiling is high, and light pours in through a rectangular window above French doors that overlook the backyard and kidney-shaped swimming pool. Maggie, my eleven-year-old Golden Retriever, lies on the floor next to me. She rests a lot lately, but I don’t take notice because I can’t remember a time when she wasn’t lethargic.

I don’t recognize this woman on the phone.

She wasn’t always this way. My pragmatic mother could be counted on to handle anything with steady, focused, calm determination. She used to meet life head-on.

When Mom was only forty-seven years old, Dad’s sudden death in 1961 left her widowed for a second time. She planned his funeral and, within two weeks, took over as a partner in his furniture factory. A year and a half later, the factory went into bankruptcy because Dad’s partner, Leo, understood nothing about business and Mom knew even less. She didn’t miss a beat. She dressed in beautiful knit suits and held her head high each day as she went to bankruptcy court. She never once showed a hint of fear or concern about our future. After the trial was over, Mom enrolled in school and began a whole new career as an insurance underwriter. Her courage and determination allowed us to keep our home.

Mom, give me the doctor’s name and number and I’ll call him.

No.

What do you mean ‘no’?

No means no. I’m not going to tell you.

Ugh! If I thought it would help I’d bash my head into a wall to alleviate this frustration and release the intense emotions that blow hard inside me as if carried by an impatient windstorm.

Dammit. She’s shut the door, sealed the vault, and negotiations are over. Under normal circumstances my mother can out-stubborn me any day of the week, but I’m certain her current situation is unlike anything we’ve dealt with before. If she thinks she’s won this round she is seriously mistaken.

All right, Mom. Got to go. Call you later.

Okay, Ginni, she says, her voice relaxed.

I love you, Mom.

I love you, too.

I hang up the phone and take a full tour of my home as though examining the furniture and artwork will yield the doctor’s name and number. Somehow it works and his last name pops into my head, which is a miracle because I never met the man, and Mom seldom speaks of him. They are in Los Angeles, and I live more than one hundred miles away.

I dash into the bedroom I use as a home office. The simple rectangle of a room contains a narrow three-shelf bookcase, secretarial chair, and long, blond desk that straddles two connecting walls. I slide into the chair, start my Mac, and commence an Internet search for every doctor in Los Angeles with the last name Green. An unseen something must be with me because I recognize the first name, Marvin, and immediately call him.

Dr. Green’s answering exchange, a smoky professional female voice with a tinge of the South answers after the third ring.

Please, I need to speak to the doctor. My mother is his patient and I think she has a blood clot in her leg.

That doesn’t sound good. Dr. Harwitt, who works with Dr. Green, is taking his calls tonight. I’ll get hold of him right away.

I appreciate your help. I give her my mother’s name and phone number.

You just relax, honey. I’ll take care of everything, the lady’s voice, sweet as velvet cake, reassures me. I’ll call him right now.

Thank you.

I press and release the button on the phone, tap in my mother’s number, and stand up. Maggie observes with disinterest as I circle the room while I wait for Mom to answer. As soon as she does, I tell her to expect a call from Dr. Harwitt.

Oh. She sounds like she just sucked on a lemon.

Mom, I’m going to get off the phone now so your line won’t be busy when he calls. Call me after you talk to him.

As soon as I hang up, I slump down in the chair and lift my hair off my neck to cool down. My shoulders are tense; the tightness stretches up my neck to the bottom of my ear lobes. I press the palms of my hand into my forehead and shake my head to try to get the tension out.

I’ve done what I can and have to wait. What if this is it? What if the clot moves and Mom dies? I’ve been afraid of this day since Dad died, and now it’s here, an unwelcome load of garbage dumped in the middle of my house. Much as you irritate me, Mom, I’m not ready for you to die! My eyes fill with hot tears that don’t spill but hang like an acrobat balancing on a tightrope. I uncurl my body and sit tall in the chair. I’m my mother’s daughter, and we do not fall apart in a crisis.

A sudden loud boom, bang, crackle rattles the window above the desk and I leap out of the chair. The rapid beat of my heart thuds hard against my ribs. I forgot it’s the 4th of July, and now the firework celebrations have started. When did night fall?

I’m alert and jumpy, like I’ve had too many cups of coffee. I go back into the family room and turn on the TV to distract myself, but the strategy doesn’t work. I check the clock every few minutes. An hour seems to crawl by slower than the past decade of my life. I can’t stand to wait any longer; I call Mom. Maggie sits by my side and I pet her head while I wait for Mom to answer. One, I’m composed; two, my breath speeds up; three, Now where the hell is she?; four, finally, she answers.

Did you talk to the doctor?

Yes, he called. She sounds bored and distracted. I imagine her lips taut and her aquamarine eyes focused and hard with an all-too-familiar look of exasperation.

What did he say when you told him your symptoms?

He said it was nothing to worry about, and I should call Dr. Green’s office tomorrow morning and make an appointment.

Did you tell him about the pain in your groin?

Silence.

Ma-om, I whine, like my old teenaged self.

Virginia, let it go. Her voice is hard as steel, a tone I recognize. She’s reestablished herself as the parent and the conversation is closed.

I call the doctor’s office as soon as we hang up and ask the kind lady with the southern drawl to tell Dr. Harwitt to call me A-S-A-P. Ten minutes later, the phone rings. I grab it on the first ring.

This is Dr. Harwitt, a pretentious, fustian voice says, and continues before I can respond, Listen, there’s nothing to worry about. Your mother is fine.

Is this guy an idiot? I would like to wring his arrogant neck, but I need him, so I won’t let him hear my frustration.

She’s not fine. She has all the symptoms of a blood clot.

When I spoke to her, she described her symptoms and they did not sound critical to me. She can call Dr. Green tomorrow. He talks the way adults spoke at me when I was a child and they didn’t want me around. How often did my parents say, Children should be seen but not heard?

I realize I’m not getting through to him, so I end the call with a simple thank-you-and-good-bye. The line goes dead, and for a moment I stand there. The sound of the fireworks has disappeared, and I am surrounded by silence. I scan the room but see nothing. I let Maggie outside to pee, then we pad across the house and into my bedroom, where I change into my sleeveless nightgown, climb into bed, and switch on the TV. Maggie jumps on the bed and cuddles next to me. It’s been just Maggie and me alone in this bed for a long time, and I no longer fool myself that having a man in my life would make this evening or what’s ahead any easier. I roll over and rest my head on Maggie’s body, hoping the drone from the TV will block out my worries and lull me to sleep.

Chapter 2:

Practice Round Day Two

What you say and do in a crisis matters.

—Ami Bera

MONDAY

I’m awake although my eyes are closed. I dread the thought I’ll be in the dark when I open them, so I keep them sealed and hope I can fall back to sleep. Despite the air conditioning, the room is warm due to its thin walls and inefficient vents. I throw the sheets off. The only sound is Maggie’s soft, rhythmic breath. I toss and turn, like the princess and the pea, unable to find a comfortable spot. I curl up and stay still as I wait for sweet unconscious sleep to embrace me, but sleep remains distant.

I wonder if my mother is okay. Perhaps this is part of the reason I can’t sleep—but the truth is, I can’t remember the last time I slept through the night. Probably sometime in the 1980s. I’ve read that insomnia is common in women once they reach their mid-to-late thirties. I squint over at the clock but the numbers are a blur. I search for my glasses. When I feel the temple, I grab them and slip them on. Temple is a funny name for the sidepiece that extends from the front of the glasses to the back and around the ears. I always thought of a temple as a place of worship. In a way I do worship my glasses, because they give the gift of sight to my very nearsighted eyes. If only I could see my future.

The clock glares 2:00 a.m. I should have known. It’s always 2:00 a.m. when I wake up like this.

I turn on the TV, set the sleep timer to turn off in ninety minutes, and watch a rerun of The Fresh Prince of Bel-Air, a sitcom starring Will Smith. The show is not funny, but the sound keeps my mind quiet—finally.

Ribbons of sunlight stream into the room through the vertical blinds. I’m groggy, and it’s like my head is wrapped in cheesecloth. I’m always in a fog after a broken night’s sleep. I check the clock and it’s 6:00 a.m., so I get up, pad across the house, scoop coffee into the coffee maker, turn it on, and pad back to the bathroom to start the shower. I try not to look at myself in the mirror while I dry off. Those extra ten pounds are still there, and cellulite is spreading like a virus throughout my chubby thighs. Mom’s legs are long and lean with no cellulite, and although she’s only five foot three and I’m five foot seven, her legs are longer than mine. Her blue eyes change colors depending on what she wears, sometimes cerulean and other times emerald green. My dark brown eyes remain brown no matter what.

I wait until 8:30 to phone Mom. I pour the last bit of coffee into the sink and put my favorite mug into the dishwasher while I wait for her to answer.

Did you call the doctor?

Yes, she says, her voice robotic, devoid of all emotion.

And?

They say he can get me in late this afternoon.

Dammit! She needs help before then.

Did you tell him everything?

Yes, Virginia, I told him everything. I imagine she purses her perfect lips into a frown.

Good. I don’t trust that she did but decide I won’t push the point further, and we say good-bye. Without a second’s hesitation, I dash into my office, retrieve the scrap of paper with the doctor’s phone number on it, and punch in the numbers. I pace back and forth across the room.

Dr. Green’s office, a girlish voice answers.

I introduce myself and ask to speak to Dr. Green. The girl tells me he’s with a patient.

This is urgent. I must speak to him right away about my mother. Please, get him! Maybe I bark at her but I don’t care. My one last nerve is about to shred, and I am already stripped of all patience.

One moment, please.

Two minutes go by and a brusque man’s voice starts the conversation midsentence— There is no rush. We’ve made an appointment for your mother this afternoon at three.

Don’t these doctors ever say hello?

Excuse me, Dr. Green. There is a rush. I am determined to jolt him out of his complacency and get my mother into his office. "My mother’s leg is swollen and she is experiencing pain in her groin. If my mother says something hurts, then something is very wrong. She’s been your patient for a long time, so you must be aware my mother never complains. You need to see her right away."

Dr. Green’s voice lightens and he says, You’re right. Your mother never does complain. I’ll tell my nurse to call her as soon as we get off the phone, and we’ll fit your mom in the minute she arrives.

Thank you so much, I say, my voice soft and sweet.

After we hang up, I sit down at my desk and take a few minutes to select an activity for tonight’s group for children between the ages of six and twelve who’ve lost their parents. Four years ago I founded The Mourning Star Center, a nonprofit that provides free support for grieving children and their families, and I lead all the children’s groups.

When I’ve decided on what I believe to be the perfect activity, I call Mom to check on whether the doctor has done as he said he would.

I’m leaving for the doctor’s, she says after I say hello. I was at the door, on my way out, when the phone rang.

Okay, Mom. I won’t keep you. Call me as soon as you’re done. I want to hear what he has to say. Okay?

She agrees, and after the I love yous, we hang up.

Two hours later, I stand at the kitchen sink and sip a glass of water as I stare out the window at the brown Santa Rosa Mountains and Ike’s Peak (named for President Eisenhower) in the near distance. The heat outside is so intense the air has a density that casts a translucent shroud over the mountains and sky. 108 degrees is unbearable in most places, but in Indian Wells—a small enclave seventeen miles southeast of Palm Springs, California— today is just another summer day. The real heat is still a month off, when temperatures will soar past 115 and never cool down lower than 100, day or night.

My shoulders are hunched high and tight. I have no idea what I think or feel. I’m not in denial. It’s just that my mother has always been healthy, and since I’ve never been in this situation before, I am left with only an ominous sense of what the next few hours are going to bring.

The shrill sound of the phone jolts me out of my reverie.

Hi, Ginni, Mom says when I answer. I’m in Dr. Green’s office, and he’s putting me in the hospital immediately. I hold my breath and lean against the counter for support. He won’t even let me go home. He thinks I’ve got a blood clot in my leg. She sounds like a serious little child—not afraid, just tentative and young. My mom would never tell me she’s afraid. She’s stoic, which means she never shows sadness or fear. Subdued anger, disdain, and sarcasm are okay for her particular brand of stoicism, but never the softer emotions. Even so, I understand my mother, and I sense the concern below her calm.

That’s what I thought, Mom. My voice is level so she won’t hear how tense and scared I am. It was one thing to think she might have a blood clot; knowing her doctor agrees is a whole new level of dreadful reality. I’m glad he’s taking care of you. Which hospital?

UCLA.

Perfect. Call me as soon as you’re in a room so you can give me the phone number where I can reach you. I love you.

Okay. I love you too, honey.

I freeze for a moment, shake my head to clear my thoughts and toss off the inertia. I create a plan of action. For the next few hours, I call everyone I can think of in my search for someone who will watch Maggie and a volunteer to answer the phones and take charge of the children’s groups. A girlfriend agrees to take Maggie, but only one volunteer can help, and she’s not available until Wednesday.

When Mom calls to gives me the direct phone number to her hospital room, I tell her I’ve made arrangements so that I can be there on Wednesday.

I’m so relieved.

Why, Mom?

I called Peter, and when I told him I expected to be released by Friday and asked if he’d drive me home, he said that he and Ellyn would be away on vacation.

I’m glad Mom can’t see my face, as I wouldn’t be able to hide the level of disdain I feel towards her firstborn, my older half-brother, Peter.

I’ll be there as long as you need me, Mom.

After we hang up, I feed Maggie and drive the five minutes to the Center in time to meet with my volunteers before the children and their parents come for this evening’s group.

Four hours later, I slide into my white 1994 Lexus. When I turn the ignition key, the radio comes on to the sounds of Ricky Martin’s Livin’ La Vida Loca, which is ironic since my world is about to turn into living the crazy life—but without the upbeat, get-off-the-couch-and-dance fun music sung by a cute young Latin male.

I’m beyond exhausted and look forward to being home in my bed with Maggie at my side. I hope I get a good night’s sleep.

Chapter 3:

Practice Round Day Four

A lot of people don’t want to make their own decisions.

They’re too scared. It’s much easier to be told what to do.

—Marilyn Manson

WEDNESDAY

I pause at the doorway. My mother is sitting up in a white hospital bed next to the window at the far side of the room. The typical Los Angeles haze mutes the light of the sun but enough daylight seeps in to make the dull beige room feel less drab. A heavyset lady with curly gray hair snores in the bed closest to the door. Behind me a silver food cart pushed by a woman in green scrubs squeaks through the dreary hallway.

The head and foot of Mom’s bed are elevated, and her attention is on the TV set attached to the wall across the room. A silver pole with a hook holds a bag with clear liquid connected by a tube to her left arm. Her arm is dappled with deep purple bruises that make her look as though she has been punched in several places.

Mom doesn’t turn as I enter the room, and I wait until I am close before I speak so I won’t wake her sleeping roommate.

Hi, Mom.

She looks weary, and her silver hair is flat and matted in the back. Her blue eyes are glossy and paler than normal, like a washed out sky.

Hi, honey. I’m glad you’re here, she says with a weak smile. The smile reminds me of the smiles I see on the grieving children I work with, smiles that never reach their sad eyes. Despite the tube attached to her arm, she reaches out to me, and I bend over the metal rail on her bed and kiss her cheek, careful not to jostle anything. The white hospital gown with faded blue flowers drowns her tiny frame, and she reminds me of a small, fragile waif.

I walk around to the other side of her bed, pick up the metal chair near the window, and scrape it closer to her.

How are you feeling? I ask as I drop into the stiff chair.

Call the doctor.

Call the doctor? My head tilts to the right and my brow furrows. Why?

Just call the doctor. She gestures towards the phone with her eyes, and hands me a scrap